Does anyone have any experience with hearing loss? I always post about my son, but now it turns out my 9 months old baby girl has moderate/severe hearing loss in both ears. Anyone have an experience to share? I'm so sad over this, and that it was missed in the newborn screens and only just now diagnosed. We're waiting on hearing aids/further testing, but just trying to process it all.
Re: Hearing loss
We have a couple mommas who im sure will be very helpful.
Yeah I really wasn't sure where to put Nate for the longest time. Initially, I totally thought he would be mainstreamed.I was super pissed and reluctant to learn ASL because I thought he would talk one day. He has a lot of other needs though, too.
We also could have never guessed that he would not be able to talk due to dysarthria (stroke victims can get this diagnosis if they no longer have control of portions of their mouth).
Mainstreaming is a great choice, too. YOU decide. For Nate the best option was a deaf school. He expresses himself with ASL and the class sizes are small enough (8-10 kids with 2 teachers) that he can get a lot more attention for his other needs.
Thanks so much for sharing your experiences. I still feel like I'm stuck in a bad dream and almost am mourning the loss of the typical experience I thought we were having after going through so much with my son. At least his therapies have eased up quite a bit, so we can get on this, though maintaining full-time jobs sounds so overwhelming. We are in the DC area and COL is so high that we both need to work.
I appreciate the guidance on schools. Even though it's a while out, that's what I find myself obsessing about. Right now both kids are in a regular daycare center and have been doing well. But now I just don't know what to do. How much therapy and intervention am I looking at on a weekly basis for dd? What do I need to get her caught up on speech? We definitely want to focus on oral language. As far as we know, this is the only issue she has, and I'm praying that's the case though we will learn more next week I guess. I know there are some schools around here. Does insurance cover tuition? Or subsidize it? The one everyone recommends is very expensive. And then how do I manage part-time preschool and then after care plus daycare for my son? What have you guys done?
As for the hearing aids, does it restore hearing to normal levels or do sounds still seem distorted as far as you know? Have you ever considered cochlear implants too?
I have called EI and have an auditory-verbal therapy apt set up for this week and I think they also have a parent-infant support group.
I just feel so sad. For some reason, even though my son had extensive issues, this feels so much harder since with him there was always the hope, the dangling carrot, of him completely catching up and this being a distant memory one day. And really, after years of intensive therapy and many procedures/surgeries, he really has come so far and nobody would ever know what he's been through. But this. It feels so permanent. She's such a sweet baby girl and I just never saw this coming. I am so upset that she fell through the cracks of the infant screening.
Anyhow, I can't even begin to tell you how much your stories and experiences mean to me. You're right. I hate the word 'deaf' right now. I've been using it to try to desensitize myself, but I'm still not fully in an acceptance stage. I keep thinking that maybe they were wrong and there really is just fluid somewhere and with tubes it will all go away. I know that won't happen, but that's just where I am.
Thanks so much. I am in Maryland so I'll PM you.
Thanks so much for posting. Yes, this is the same type of loss my daughter has. The ENT suspects that it is a nonsyndromic genetic cause but we are just about to do all of that testing to see.
What an interesting link. I hate that dd still can't hear. Those aids can't come fast enough. What was your son's reaction when he first got them on? I've been comforting myself a lot by watching youtube videos of baby's reactions to first hearing sounds. Amazing miracles.
Yeah, school is a big deal to me. I want to make sure that I give both ds and dd every opportunity possible to not let their special needs stop them from doing anything in this world. I know that's what every mom on this board wants. I have the county coming next week so I will learn more then, but from what I can tell, I'm not going to love their go-to options. I've located what seems to be a great private school that was recommended by someone I was placed into contact with. We will see it tomorrow. She would be able to do half-days starting at 18 months. Right now she is in a full-time daycare that we love, so I hope she can stay there. In general, are daycares open to dealing with hearing aids? I will need to talk to them, but I hope so. If not, then we will need to get creative as my son definitely needs an environment like that.
I am also hopeful that because the preschool for dd does SL therapy, it can be partially covered by insurance. I guess I'll see how that goes.
I just feel like there are so many things to do here for this. I'm trying to get on top of it all.
How much therapy and intervention am I looking at on a weekly basis for dd?
This depends on you county. We weren't offered a TOD until I self referred to MSD. EI does have TOD that do home visits. Since we did the infant program, we were at school two mornings a week. We had home visits once a month. You can also have your TOD go to daycare and work with the teachers there, but I cannot see how this would work since the teachers are watching the other kids.
I have not done CI speech therapy, but I know it can be hard work from what I see my friends go through. There are also more appointments after the surgery to activate the CI and then map it for your child.
What do I need to get her caught up on speech?
Some counties offer a speech therapist right away for deaf kids and some counties take a wait and see approach. I waited until Nate was about 15 months to start speech. We had a ton of other stuff to work on. He has speech twice a week, but that is not because of his deafness.
Does insurance cover tuition? Or subsidize it?
I have never heard of this. You could look into getting some tax breaks for the tuition, but I think you have to prove that you don't have any other options than the private school. You probably won't be able to prove this being in Maryland. Your public school is free and Maryland School for the Deaf is free. I am not sure about Kendall. I would track your expenditures regarding the hearing aids and any OOP you pay if you go the CI route. Include mileage to and from appointments and therapies. You need to accrue something like 7% of your income to deduct the expenses. I would see if you could even get to that number OOP before I wasted time documenting everything. Insurance premiums can be part of that deduction if you pay OOP for insurance and it is not subsidized by your employer. (I think)
And then how do I manage part-time preschool and then after care plus daycare for my son? I
Once your DD turns 3 and has an IEP, busing services should be provided, but not all counties will do a half day bus. I suspect that Montgomery Co would be more accommodating because the parent expectations are pretty high there. If she is in an all day preschool (MSD has all day threes) she will ride the bus and you can arrange for the bus to drop her off at the daycare. I do know a couple parents in our 2's class that were able to get busing. (2's go everyday 9-12 at MSD)
Our challenge for child care is the fact that Nate cannot talk and needs sign language to express himself. I would feel awful putting him in a daycare that couldn't understand him. He would be isolated all day long. This is also a challenge for getting a babysitter if you go the sign language only route. Once you are in the deaf community though, babysitters are easier to find. I have been resisting pretty hard going the PECS route because I am not working right now and I honestly feel that one day he will be able to speak well enough to get his needs met. I think cognitively he could pick up PECS pretty fast if we need to get him an AAC device in the future.
As for the hearing aids, does it restore hearing to normal levels or do sounds still seem distorted as far as you know?
This is a good video demonstration for FM systems, but the audio is actually recorded by a hearing aid microphone so you get an idea of what it 'sounds' like. How things will sound to your child depends on the level of hearing loss and the available amplification in the aids. I would ask your audiologist what he/she expects for a level of aided hearing on your DD. You can also request a booth test while your child is aided to check their hearing level. However, a booth is an ideal listening environment because it is a soundproof room with padded walls and carpet. There will be no background noise mucking things up.
https://www.youtube.com/watch?v=1l37lzLIgQU
Have you ever considered cochlear implants too?
Nate does not qualify for CI's. If he did, we would have got CI's because he has the deck stacked against him for other reasons. We probably would do the CI's if Deafness were his only problem too.
Oh wow, you guys. These videos and links are so incredibly helpful and that surgery is a total miracle. I see also that Stanford has a very active group working on stem cell research to regrow hair cells and ultimately restore normal hearing. They have already regrown ears and inner ear parts for mice, and now are working on this for people. I know there are reasons to be very hopeful that we will see major advances in our LO's lives for this.
And that simulation video is just amazing--so helpful for understanding the challenges. I think we will buy an FM system to make sure dd can maximize her hearing potential at home and daycare/school.
Our hearing aids are covered I think, so they will be here in two weeks.
Thanks so much, the more stories I hear the easier it is to realize the future is bright, despite the extra needs and work involved. Thank you also for sharing your blog. Your son is adorable. The aids have been ordered so we should have them in a week or so. I just hope we can keep them on! I wonder what it will be like for her to finally hear?
One thing I strongly urge you to do, find some deaf adults to talk to. There are many deaf and hard of hearing people who use ASL rather than oral speech, and are successful and happy. It's important to know this! Also, language is much more important than "speech." If a child is understanding only 60% of spoken language, that child may be able to have more access through the use of ASL, or total communication.